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Tuesday, December 31, 2013

I checked my PO Box yesterday and
found an order for Alzheimer’s Anthology
of Unconditional Love. It was obviously from the ad that ran in Rural Missouri in 2007 when the book
first came out. It happens occasionally. Someone is browsing through their old
copies, come across the ad, and order a book.

This afternoon, I went into Facebook
and saw where someone posted a note on a vote for my blog in Healthline’s
contest, “Did you see the ad for Linda’s book in Rural Missouri?” What? I had
just gotten my Rural Missouri today.
I pulled it out, leafed through it and there was the ad. Looks just as good as
it did when the book was hot off the press.

The story of the anthology is a
story in itself. I had never published a book before, but after joining the Columbia
Chapter of the Missouri Writers’ Guild, I learned a lot about self publishing. I
married that with my fundraising experience and came up with the idea to get
sponsors, publish a book of Alzheimer’s stories, and give the proceeds to the
Alzheimer’s Association. I pitched the idea to the staff at the Mid-Missouri Chapter
office and they didn’t think I was crazy, so I proceeded.

One small problem to overcome. How
could I get the stories? I sent emails to all my Alzheimer’s contacts, posted
on message boards, and spread the word. Then, Jim McCarty of Rural Missouri asked me to write an
op-ed about Alzheimer’s and the anthology. Once it was published, the stories
came pouring in. The Chapter made the selections, and I began to build a book
of compelling slice-of-life stories about our friends and neighbors who met
Alzheimer’s up close and personal. These were the stories of caregivers’
unconditional love and the courage of those diagnosed with the disease.

Sandy Jaffe, the owner of BookSource
and an Alzheimer’s advocate I met at the Alzheimer’s Forum in Washington, D.C.,
offered his expertise. He became my hero in this story. He hired a cover designer, found a distributor, and a printer. He called in favors and the book was
published at no personal cost for me or the Alzheimer’s Association. Proceeds
would be pure profit. Before long, we sold the first 1,000 copies and began the
process for the second printing.

Just when I thought the books were
about all gone, Sandy found some in his warehouse and sent them to me. So, luckily,
I have plenty of books to fill any orders the ad might generate.

By the way, if you don’t get the Rural Missouri and would like to order a
copy of Alzheimer’s Anthology of
Unconditional Love: The 110,000 Missourians with Alzheimer’s the
information is on my Website at www.lsfisher.com,
or you can send $10 + $2.50 shipping to me at PO Box 1746, Sedalia MO 65302.
Please make your checks payable to Alzheimer’s Association.

Maybe the blast-from-the-past ad
will bring in some funds for the Alzheimer’s Association to help them further
their mission. As we leave the past behind and move on to a New Year, let’s each
of us resolve to do our part to make this a better world for those who have
dementia.

How can you join the fight against
Alzheimer’s? Lace up your shoes and
participate in a Walk to End Alzheimer’s next fall, visit a loved one with the
disease, help a caregiver, write your senators and representatives about
Alzheimer’s research funding, or make a donation to your local Alzheimer’s
Chapter. If each of us takes one small step, we can circle the globe with love
for those with the disease and create hope for a world without Alzheimer’s.

Sunday, December 22, 2013

’Tis the season to be _______. How
would you fill in that blank? Of course, you may have the Fa, La, La, La song
to convince you the word has to be “jolly.” The problem with Christmas and Jolly are they don’t always go together.

By its very nature, Christmas is a
time of nostalgia, and folks, I’m here to tell you that nostalgia can be a dangerous,
depressing emotion. If you have happy memories, you are sad because the past
was happier than the present. If you have sad memories, you can become
downhearted from thinking about it. It’s easily a lose, lose situation.

It’s also the season for stress on
steroids. People are stressed about everything during the holidays second
guessing themselves. Did I spend too
much? Did I spend too little? Did I buy the right size? Will he hate it? OMG,
hope she put a gift receipt in here so I can take this back.

And how many times have I pulled out
the wrapping paper, scissors, bows, ribbons, and ho-ho-ho not a piece of tape
in the house. Maybe I could hold this
sucker together with all those address labels that every charitable
organization in the United States sends me. A word from the wise—don’t do
it!

Don’t forget all the Christmas
events that may or may not be cancelled. The weather is always dicey this time
of year. The Christmas parade was tossed forward from week to week until we ran
out of weeks. I remember the years I worked on Christmas floats for Alzheimer’s
and then later for my women’s group. It seems that I’ve always been fortunate
enough to work in an unheated miserably cold building. I can’t even imagine the
frustration of going through all that work just to have the weather throw a
hissy fit every weekend in December.

Nothing says holiday season like
hazardous roadways. Throw in a little freezing rain and a half foot of snow and
it is a fool’s errand to rush around trying to buy those last minute presents. Then,
I can’t help but ask myself—did I, or did I not, buy something at Target when I
was in there a few weeks ago? I hardly ever shop at Target, but there I was…just
at the perfect time for the credit/debit card bandits to strike.

It’s really a lot easier to enjoy
Christmas when you reduce the pressure. I’ve tried to get my shopping list
pared down to the bare bones. Just buying for the sake of buying isn’t my idea
of fun. And those long lines snaking around the buildings while the wind chill
is 40 below…no way! On Thanksgiving Day, no less. Black Friday was seriously
anti-climatic after all the stores decided to skip being thankful for pushing
the bargains. That darn Christmas stuff was out before Halloween. I wouldn’t be
surprised if the Labor Day sales next year are the beginning of the Christmas
Shopping Season. Why not just move it up to Independence Day? Firecrackers and
tinsel. They do kind of go together, don’t you think?

Don’t get me wrong. I’m not down on
Christmas; it just doesn’t always seem to be the magical time of year for me.
Oh, I enjoy Christmas lights and Christmas carols just as much as the next
person. I’ve become a Hallmark Christmas Movie addict. The thing I love most is
having my family over for our annual Christmas get-together. It’s a laid back,
no pressure, big pot of chili good time. The reason I enjoy Christmas is
because I have no expectations, I refuse to wax nostalgic, and I celebrate it
without fanfare.

The one thing I don’t care about is
all that pressure to be, you guessed it, jolly.
I’ll be happy because I choose to hold that emotion in my heart whether it’s
Christmas or any of the other 364 days of the year. I’m a happy person. Jolly?
Not so much.

Monday, December 16, 2013

Some people
embrace change while others participate after they’re pulled into it kicking
and screaming. I’m not sure that I fit totally into either category; I just
know that the only thing that stays the same is that everything changes. Okay,
so I may have borrowed that expression from a country song, but darn it, I’m
sure I’d have thought of it eventually.

My life is
about to change dramatically. After thirty-three years of driving to Central
Missouri Electric each day to report to work, I’m embarking on that
long-sought-after, scary, wildly dramatic change called “retirement.” It’s what
I’ve worked and saved for throughout my career.

Most of my
waking hours have been spent inside the doors of that building sitting in front
of a computer monitor. Some days were more challenging that others, but my work
career was one filled with learning new skills. I’ve done everything from data
entry to management and had a rare opportunity to see the Coop move from a manual
system into the world of computers.

Our computer
programs were on an IBM System 34 and did not have such luxuries as word
processing. Before we had PC’s in the office, I typed the board minutes on a
typewriter, and suffered through the frustration of having to retype an entire
page if I left out a word. I’ll admit, I hated to give up the Smart System for
Word Perfect, then later to “downgrade” to Word. After seeing those gigantic columnar
ledgers that Ann Richards and Grace Arbuckle used, it gave me a much greater
respect for spreadsheets.

I saw a lot
of changes during my years at the Coop, and in retrospect, I’ll admit that most
of them were for the better. Changes in my job kept it from ever becoming stale
or boring. Even the people changed. I went from being the newbie, the first
office employee to be hired in seven years, to being the person who had worked
at the Coop the longest. That means I was working with a different set of people
than those who were there when I first began.

There wasn’t
a lot of turnover and most of us worked together for several years. Co-workers became
family—some are like brothers and sisters, others are like crazy aunts or uncles,
or distant cousins. Just like family,
you learn their quirks and learn to accept that as a part of the person, or better
yet find humor in individual personalities.

At the
employee/Christmas dinner, Kathy Page said I was getting ready to start a new chapter.
For an avid reader and dedicated writer, that’s the perfect description for how
I feel about retirement—a new chapter in a good book—one that keeps me turning
the pages. It’s a book I don’t want to put down, I find it intriguing,
mysterious, suspenseful and I keep flipping pages wanting to know what’s going
to happen yet. My mind is rife with anticipation, excitement, and plans for
what will happen next. My life’s book is filled with rich characters who move
in and out of the pages, imprinting their images on my heart, filling my days
with love and laughter.

Just like a
good book, my life has been a quest, and a journey, into the unknown to conquer
all kinds of evil and overcome failures. Like all good stories, the protagonist
in my story (me) is flawed, makes mistakes, passes up opportunities, often misses
the mark, but still manages to overcome those itty bitty character flaws to be
triumphant in a small way.

Is this
going to be a new chapter, or an entirely new book? It seems that retirement is
in a way a happy conclusion to one book, and time to begin a new one. Oh, sure
it’s going to be a series with many of the same characters, but a new set of
adventures. Keep reading, because this new book promises to take a few strange
twists and pack some surprises along the way.

Sunday, December 8, 2013

When we hold a newborn baby in our
arms, we look into his or her eyes and wonder what kind of life is
ahead for this new being. Our job as parents is to protect our children and keep them from harm. We shower them with love and envision how
their future can reach greater heights than we ever did.

We worry about the little
things—stomach aches that make the baby uncomfortable and makes him
cry. We may worry about childhood diseases and make appointments for
immunizations.

Unless a family has a serious inherited
genetic disease, most parents don’t worry about what diseases their
newborn might face later in life. Now, a new study may add to the
list of new parental worries. Researchers have been looking for
Alzheimer’s in the most unlikely place—in the brains of infants.

The tests on 62 infants aged 2-22
months began with a DNA test to determine which ones had the gene
variant APOE-E4, a risk factor for Alzheimer’s disease. Sixty of
the infants had the gene variant. MRI scans were used to measure
activity in the infants’ brains to compare the infants without the
variation to the ones with it.

Oddly enough, differences were observed
in the brain scans of the infants. The infants with the APOE-E4
variant had an increased brain growth in the frontal part of the
brain with less growth in the middle and back parts of the brain.
This is similar to the brain activity in adults who have Alzheimer’s
disease.

The type and number of copies a person
has of the APOE (apolipoprotein E) allele is associated with the risk
of developing late-onset Alzheimer’s. The APOE gene has several
functions, including carrying blood cholesterol through the body.
APOE is found in neurons and brain cells in healthy brains and in
plaques in the Alzheimer’s brain. Three common alleles are E2, E3,
and E4. E2 is thought to protect from Alzheimer’s, E3 (the most
common) is thought to be neutral, and E4 is linked to an increased
risk of Alzheimer’s. People with two E4 alleles, have a greater
risk of developing Alzheimer’s, but may not develop the disease,
just as people without any of the E4 variant may develop the disease.

The good news is that although these
infants have the APOE-E4 variant, it doesn’t mean they will grow up
to develop Alzheimer’s late in life. Even better, the infants with
the variant didn’t show any developmental delays.

The study was intended to increase
understanding of how the gene influences brain development.
Sean Deoni, Brown University’s Advanced Baby Imaging Lab, said,
“These results do not establish a direct link to the changes seen
in Alzheimer’s patients, but with more research they may tell us
something about how the gene contributes to Alzheimer’s risk later
in life.”

The studies on infants is interesting
and may be a piece of the puzzle when it comes to figuring out the
genetic influence on Alzheimer’s. Just like any disease influenced
by genetics, environment may be the key to provide an override of the
gene pool and remaining healthy. Research shows that physical
activity and good nutrition with healthy food choices can reduce the
risk of Alzheimer’s disease. Social interactions, puzzles and brain
teasers are ways to keep your brain active.

Our children complete the circle of
life. We hope they inherit our good traits and healthy genes and the
risk-carrying genes are allowed to sink into infinity. When we rock
the cradle, we need to worry less about genetic predispositions and
concentrate on raising our children in a healthy environment.

Friday, November 29, 2013

It exploded like a bomb, shook like an earthquake, sounded like a tornado, looked like a wildfire, felt like the end of the world.

Still from Jason Knox Video

I was having trouble sleeping so I was lying in bed reading a book. I heard an explosion and my windows rattled. If it had stopped there, I would have been fine. Instead, the house shook and shook.

I jumped up out of bed and ran through the house while I tried to figure out what was going on. The way the house was shaking, I thought maybe it was an earthquake. A loud roar sounded more like a tornado, but I had come home at 9:00 p.m. and knew the sky was clear. I had stopped for a moment on the walkway to breathe in the fresh night and look at the stars.

What could it be? The noise sounded like the entire fleet of Stealth bombers from Whitman circling my house. Had it been a bomb? Had a plane crashed? My heart pounded as I tried to figure out what was going on. The house continued to shake and the rumble was not fading.

I called my son and asked him if he knew what was happening. While I was on the phone with him, I looked out my French doors and the entire sky was lit on the west side of my house. Could a meteor have hit close by? It felt like the end of the world.

"Why don't you just come over here?" Eric asked. He could see the fireball, but it was farther away.

I ran outside, carrying my phone and I could see flames leaping toward the sky. The sound was even louder. My brother-in-law was in the yard, and like me, he had no idea what we were seeing.

"I'm getting out of here," I said to my brother-in-law. I didn't know what it was, just that it was close, and a roaring, rumbling fire was consuming the night.
I jumped in my car and headed away from the explosion. I met car after car rushing toward it. I didn't understand their thinking since no one knew what it was and whether it would explode again. I just knew that distance seemed safer to me.

Eric called back and told me it was a pipeline explosion. Of all the scenarios that had raced through my head, I never once thought of a pipeline explosion. I drove on since I didn't feel confident that it was going to stop with one big blast.

I watched from a distance and for the first time thought to snap a picture on my cell phone. The people rushing toward the explosion, or those with good cameras, captured the flames towering toward the heavens. My lone picture is not that impressive.

Thankfully, no one was hurt since the explosion was in a field. The explosion was felt thirty or more miles away. It was about seven miles from where I live.

By three o'clock the sky darkened again, and I headed back home. Soon, the night settled back into a peaceful November evening, and my heart rate returned to normal.

The view from my French doors today is still the calm wooded area it was yesterday. For that, I am most thankful.

Tuesday, November 26, 2013

November is a time for self-examination
and giving thought to our many blessings and giving thanks where
thanks are due. Many of my Facebook friends have been posting one
thing they are thankful for each day this month.

I’ve never participated in this
delightful idea, but felt compelled to complete my monthly list in
one fell swoop. I made the list and entered it into One Note on a
sleepless night. After reviewing the list, I realized that I don’t
remember seeing any of these items on their lists. I always suspected
my thought processes might not be the same as the average person, but
until now, I’ve kept some of the weirdness under wraps.

I am thankful for...

Mice. It’s easy to think
of mice as pesky rodents with no purpose in life other than leaving
droppings behind furniture and chewing up important papers. But mice
are extremely important when it comes to medical research in general
and Alzheimer’s research in particular.

Sleepless nights. On
sleepless nights, my brain goes into creative overdrive. My best
ideas come to me in the middle of the night.

Wishes that didn’t come true.
Throughout my lifetime, I’ve made a lot of goofy wishes, and I’m
so thankful that they didn’t come true. I don’t think the life
of a fairy princess, a rock star, superhero or being married to Paul
McCartney is what God had in mind for me.

People who hurt my feelings
when I was young. Yep, all those cruel kids made me into a
rhino-hide adult. It is almost impossible to hurt my feelings,
because frankly I don’t give a poop about what insensitive, rude
people say to me.

Failure. I’ve learned
more from my failures than I ever learned from my successes. Let’s
face it, when I make really bad mistakes, I try hard to not do it
again.

Not being beautiful. Being
beautiful is a burden I wouldn’t want to carry. Besides, I had to
work a lot harder on my personality.

Hard times. There have been
times in my life when it was a challenge to figure out how to pay
the bills, feed the kids, and not have too much month left at the
end of the money. Because of hard times, I’ve never had that fear
of being poor that some people have. Been there, survived, and know
that happiness isn’t based on the size of my bank account.

Hard work. Without years of
hard work, I wouldn’t have done as well in my job as I did and
wouldn’t be looking forward to retirement.

Having my heart broken. If
a few boys hadn’t broken my heart when I was younger, my life
would have turned out differently. I’m happy with the way it
turned out, so thank you for breaking my heart and forcing me to
move on.

Rainy, gloomy days. When
the rain falls and the sun is elusive, it is a perfect time to sleep
in and laze around reading a book.

Boredom. My life is so
hectic that if I find time to be bored, I can relax...or think of
something totally fun to do.

Hunger. When I’m hungry,
I know I haven’t overeaten.

Paying bills. When I pay
bills, it means I have another month of electricity, internet, phone
service, and a zero balance on my credit cards.

Not winning the lottery.
I’ve always known that winning the lottery would screw up my life,
and I like it the way it is.

Flies and spiders. When I’m
in a murderous rage, I can squash a spider or swat a fly and not
suffer an ounce of guilt.

Clear packing tape and plastic
wrap. The way these two stick to themselves and trying to figure
out how to get a roll started teaches me patience.

Old age. Without old age,
I’d have to pay to get into ballgames and wouldn’t get senior
discounts.

People who don’t like me.
They teach me to stand up for myself.

People who take advantage of
me. They keep me on my toes and help me say “no.”

Running late. It’s
amazing how much time I’d waste waiting if I got to everything
early. Besides, I’ve avoided traffic tickets and dangerous driving
when I decided it was better late than never.

Anger. If an injustice
makes me angry, it means I am passionate enough to care.

Fear. I might not be alive
today if I didn’t have sense enough to be afraid from time to
time.

Ignorance. Since I clearly
don’t know everything, ignorance means I always have something to
learn.

Grumpy old men. Without
them, grumpy old women wouldn’t have anyone to argue with.

Lousy TV shows. When a
lousy show is on TV, it is much easier for me to turn it off and do
something productive.

Bratty kids. I’m so
thankful that none of those bratty kids belong to me.

Runny nose. Without a runny
nose, I’m sure my head would explode from the inside out when I
have a head cold and infected sinuses.

Thunderstorms and lightning.
We need the rain to replenish the earth and the lightning keeps me
honest since I don’t want to be struck down for telling a lie.

Bad lab results. Without
bad lab results, I wouldn’t have incentive to work toward being
healthier. I would have continued the same bad dietary habits with
the same results.

Uncertainty. I don’t know
everything that is going to happen in my future! Uncertainty keeps
me optimistic that the best is going to happen and not the worst.

One of the great things about making a
list like this is that it made me realize the thing I am most
grateful for is living the life I want and wanting the life I live. I
am happy to be me and I don’t envy anybody else’s life or want to
be somebody I’m not.

Friday, November 22, 2013

I don’t believe anyone had ever asked
me that question before, but it really got me to thinking about time
travel. I remember the first time I read H. G. Wells’ The Time
Machine and saw the original
movie. The Time Traveler observes that time travel is a fourth
dimension and “only another way of looking at Time.”

Then,
of course, time travel was common on Star Trek.
I remember one episode when Captain Kirk and the crew from the
Enterprise went back
in time to find themselves in a gunfight against the Earp brothers at
the O.K. Corral. They survived when Mr. Spock realized that the time
travel was an illusion in their minds.

We travel to the
past in our dreams and in sudden flashes of remembrance. Travel to
the future can be through daydreams, plans, goals, or intuition. Some
claim to see the future in a crystal ball, but I’ve never had that
advantage. Jim’s grandma used to see the future in coffee
grounds...guess that’s a version of reading tea leaves. That her
coffee had grounds in the bottom is an indication of how strong it
was. I was always afraid to have her read my coffee grounds because
she once told a neighbor that her daughter would “come home in a
box.” And she did after a car wreck.

Anniversaries are a
time that make people time travel. Whether it is a personal
anniversary or historical anniversary, dates can trigger realistic
memory travel. With the fiftieth anniversary of President Kennedy’s
assassination, I’ve about overloaded on specials about the
shooting in Dallas and the mysteries that linger. Today as a nation,
many will collectively time travel to November 22, 1963. We will
think about where we were and what we were doing when we heard about
the assassination. I heard the news in the hallway at school. We sat
on the floor listening to the radio as the tragedy unfolded. I was
telling my granddaughter a few weeks ago that we were out of school
and at home watching TV when Jack Ruby shot Lee Harvey Oswald.

Before dementia,
Jim was a much more effective time traveler than I will ever be. He
remembered people, places, and dates from his childhood with more
clarity than I could remember the previous week.

One of the
cruelties of dementia is how it erases memories. In the earlier
stages, long-term memory isn’t affected as much as short-term
memory, and it seems the person with dementia has effectively time
traveled and, in fact, seems to be living in a different time. Once
an elderly lady who was in the nursing home with Jim told me that she
had to get home because her dad would be really mad that she was out
after dark.

Alzheimer’s is
like entering a time machine that zooms into the past, wiping out the
present and future. Eventually, plaques and tangles jam up the moving
parts and the fabulous time machine malfunctions leaving the traveler
stranded.

So, the answer is
“yes.” I do time travel. I don’t need a machine with whirling
dials that I have to enter to travel back and forth in time. Any
little nanosecond will do. All I have to do is rev up the fabulous
time machine located between my ears to retrieve another place and
time. As far as the future, those travels are flashes of “coming
attractions” found in the realm of imagination. Yes, I still look
forward to the future and would rather travel forward than backward
any day.

The
mind is the real time machine, and it really is
just another way of looking at time.

Sunday, November 17, 2013

In 1983 President Ronald Reagan
declared November Alzheimer’s Awareness Month. This year as we mark
the 30th anniversary of this event, we have seen both hope
and despair on the road to finding effective treatment for a disease
that affects over five million Americans.

When President Reagan launched the
national campaign to bring an end to a debilitating, fatal disease,
he most likely never imagined that he would personally become a
victim of Alzheimer’s. I know that Jim and I never suspected that
this disease would cast its ugly net over our lives.

To be aware of Alzheimer’s, you need
to take more than a casual glance at the disease. It is not a joke
about forgetfulness that afflicts the elderly creating humorous
moments of cute memory lapses. Memory is only part of the disease and
often the first symptom that others notice.

Alzheimer’s is a brain disease. Beta
amyloid plaques build up between nerve cells creating sticky clumps
that damage the brain’s cells ability to communicate with each
other. As if this wasn’t enough problems, tau tangles interfere with the movement of nutrients from food molecules and other key
materials in the brain. Without these essential nutrients, brain
cells die.

All this brain chaos, follows a
predictable pattern in a brain diseased with Alzheimer’s. This
progression can take up to twenty years!

At first, the disease doesn’t seem
too bad. During the early stages the person with dementia has memory
problems and issues with thinking and planning. When Jim was in the
early stages, many people could not see the differences in him that I
could. These changes were subtle.

One weekend we went to Manhattan,
Kansas, to visit my son. We were going to drive downtown to get a
pizza. As we drove down the street, I spotted Pizza Hut. “Turn
left,” I told him.

“Which way?” he asked. That’s
when I realized that he couldn’t tell left from right—at least
not when it was spoken. I learned to point to the right or left.

Also, in the early stages, Jim
developed aphasia. He was a voracious reader, but began to buy
multiple copies of the same book because he couldn’t follow the
story line and didn’t remember reading it a few weeks earlier.

Eventually, Jim progressed to a
moderate or middle stage of the disease where his symptoms became
more pronounced. His appearance changed a little as he moved into
what I considered to be a more eccentric stage. He wore his denim
jacket year round and decorated it with pins and the Veterans Week
name tag from Branson. He wore dark sunglasses and used a cane. He
just looked different and began to act more childlike. Jim was docile
and agreeable—neither of which were normal traits for him. He
became more silent, his speech hesitant. Jim had been a talented
musician and could play any instrument with strings, and knew
hundreds of songs. Eventually, he could barely play and could remember only a few songs and often repeated the same line many times.

Reality set in for me during the middle
stage. Caregiving became a real challenge and I worried about Jim’s
safety. He began to wander and managed to get away from me, other
family and hired caregivers. We were fortunate and found him each
time, but only after heart-stopping moments.

In severe dementia, most of the brain
is seriously damaged and begins to shrink. Eventually, we placed Jim
in long-term care. At first he paced constantly, and seemed unaware
of most people around him. He stopped talking except for a few
words. He had to have assistance with the most basic functions of
life. Over time, he began to lose his balance and had to use a Merry
Walker, and later a wheelchair, in order to remain mobile. He went
through “failures to thrive” when he became gaunt and
hollow-eyed.

Jim had dementia for ten years and from
the beginning to the end, we did what we could to keep him physically
healthy and happy. Some days, it felt like a losing battle, but it
was always worth it.

So, during this Alzheimer’s Awareness
month, I hope that awareness is as close as you get to the disease. I
don’t believe anyone who hasn’t seen Alzheimer’s in a loved one
can truly understand the all consuming nature of the disease. I know
that I never had a clue about the reality of a disease that erodes
lives and steals a loved one away one memory, one skill at a time. It
is because of Jim that I understand the need to find effective
treatment and a cure for this incurable life-stealing disease.

Congress passed on a unanimous basis
the National Alzheimer’s Project Act which created the first
National Alzheimer’s Plan. The plan is a strategy to fight
Alzheimer’s and it is crucial that the proposed additional $100
million funding is included in fiscal year 2014 through the
appropriations process.

Missouri Senator Roy Blunt is one of
twenty-nine members of Congress appointed to a bipartisan budget
committee to report budgets by December 13. I urge my fellow
Missourians to ask Senator Blunt to remember Alzheimer’s and
support the National Plan to Address Alzheimer’s Disease.

Monday, November 4, 2013

You always know it is autumn at my
house when the ground is littered with walnuts. Even with a
handy-dandy walnut picker-upper, they seem to carpet the yard and
overflow onto the walkway. Colorful trees and flying leaves leave no
doubt as to the season. I left up Halloween decorations while I
readied my house for company.

My sister-in-law Sissy and
brother-in-law Jim had sold out and were headed to Oregon to live
near their children. My nieces, Brenda and Sherry, have spent the
past weeks helping and they were all flying back together. The plan
was for them to spend the night and I would take them to the airport
hotel Sunday.

Saturday, they arrived from two
different places. Not sure how many were going to be here, I cooked a
scary big pot of chili and had deli meats for sandwiches. As people
began to arrive, I made pot after pot of coffee. Soon my house was
wall-to-wall people. Just like the old days.

The house filled with laughter as we
visited. “You know who would have really loved this?” I asked as
family gathered in the kitchen. “Jim. He loved spending time with
family. Sometimes he would come home and say, ‘Oh, by the way,
we’re having a jam session—and I invited everyone to dinner.’
Of course, he’d have no idea just how many were coming.”

My niece, Sherry, had her video camera
going, just like Jim used to. It reminded me of the two of them
talking about their multitude of family tapes. “We’ll have the
history, Uncle Jimmy. Everyone else will forget, but we can watch our
videos and remember.” She was correct. So many slices of life would
be forgotten without video.

Sherry and I walked out into the yard
to reminisce. “We want to reminisce too,” chimed in my
granddaughter and great-niece.

“You’re not old enough to
reminisce,” I said.

“I’m half of sixteen,” my
great-niece said.

The two girls seemed to be joined at
the hip. They entertained with dance routines and songs, advertised
with posters announcing various show times. They stood on the porch
steps, facing the flag, hand over hearts and sang the National
Anthem. My six-year-old grandson stood at attention and saluted
the flag. The scene was amazing and touching, especially considering
the flag they used was my autumn “Welcome” flag, with pumpkins on
it. In their eyes, it was as valid as the stars and stripes as they
sang the song without missing a word.

Sissy and I sat at the table watching
the commotion going on outside with four-wheelers, interactions
between cousins, older and younger.

“You can sit right here and be
entertained,” she said.

“It’s like watching a reality show,
isn’t it?” I agreed.

Saturday evening, Sherry and Brenda
went to a Halloween party with my son, Rob, and daughter-in-law,
Stacey. They came in laughing and joking at midnight. One of the
highlights was Brenda winning the costume contest, without a costume.
Of course, it helped that Rob was the judge. He said she was dressed
exactly like his cousin Brenda from Oregon.

Sunday morning the time change helped
us all get up earlier than we thought possible. After coffee, we
fixed a big breakfast—biscuits, gravy, sausage, eggs—and then Rob
and Stacey tackled how to fit all the Oregon bound family’s luggage
into the trunk of my car. Amazingly enough, it all fit except a small
overnight case.

Early afternoon, we loaded into the car
for the drive to the Airport Hilton. We stopped by North Kansas City
Hospital so Sissy could visit her sister who had been admitted a few
days earlier. Then I took them to the hotel.

Sherry checked them in and Sissy sat in
one of the big comfy couches in the lobby. Jim and Brenda were
loading luggage onto a cart. When they opened the trunk, I was
impressed by the neat arrangement of luggage. There was not an inch
of wasted space!

I hugged everyone, determined to keep
it light and happy. “I’ll be seeing you,” I said.

I jumped in my car and drove across the
parking lot and stopped to have Onstar plug in the directions home.
As I sat there, I thought of Scotts Mills, Silver Falls, Crooked
Finger, the scent of pine on a breezy mountain. Thought of Jim and
how he loved Oregon and visiting his childhood places. But I didn’t
cry. I just smiled and whispered a prayer for happy trails until we
meet again.

Tuesday, October 22, 2013

We’ve all heard how important sleep
is to our health. Now, a new study published in JAMA Neurology
indicates that a lack of sleep might increase our chances of
developing Alzheimer’s. Or, is it the other way around? Does
Alzheimer’s lead to a lack of sleep?

Jim always considered sleep “a waste
of time.” He was an early riser his entire life. I, on the other
hand, could barely function without eight hours sleep.

Once Jim developed dementia, he seemed
to require only about four hours sleep. Over time, I too shortened my
sleeping hours. Between Jim and being at work by seven o’clock, I
just flat didn’t have time to sleep much. My eight hours dwindled
to six or less. I knew it wasn’t good for my health, but chronic
lack of sleep became the norm.

A common New Year’s resolution for me
was to get more sleep. I’ve struggled with health problems that may
have gone away completely with enough shut-eye. One of the side
effects of sleep deprivation is weight gain. In some ways that seems
counter-intuitive. At one time I figured the longer I was awake, the
more calories I would burn and that would make it easier to lose
weight. Wrong. It takes sleep to regulate the hormones that tell us
when we are hungry. When ghrelin and leptin are not balanced, we
think we are hungry which leads to overeating.

Instead of sleep being a waste of time,
we are at our most productive while we are catching our ZZZ’s. When
we move into the deepest stage of sleep, our bodies move into
restorative overdrive. While we sleep, we are recharging our energy
levels. Our muscles relax and our blood pressure drops. Hormones
essential for tissue growth and repair are released. During sleep, we
consolidate everything we’ve learned which improves our memory.

On the flip side of the sleep coin,
lack of sleep quality or quantity may lead to serious health
disorders—heart disease, stroke, diabetes—to name a few. A couple
of other distressing side effects are depression and premature aging.

Researchers have known for years that
people who don’t get enough sleep are forgetful. This new study
takes that concern to an entirely different level. Researchers at
Johns Hopkins Bloomberg School of Public Health in Baltimore used
scans to measure the buildup of beta-amyloid plaques, one of the
hallmarks of Alzheimer’s disease. Even healthy people can have some
plaques in their brains, but they do not have as many as people with
Alzheimer’s. The people who did not get enough sleep had more
buildup of plaques in their brains than those who reported that they
slept well at night.

Why would sleep have anything to do
with beta-amyloid plaques? It seems that while we sleep our brain is
in self-cleaning mode. During sleep our brain cells shrink which
allows cerebrospinal fluid to wash away the toxins in our brain.

Of course, this all comes with a
disclaimer that sleep might not stop Alzheimer’s, but anything that
will reduce the formation of cell-choking plaques can be seen as
therapeutic. In addition to sleep itself, the researchers believe
that drugs should be explored to force the cleansing process that can
occur naturally during deep sleep. This study just reinforces the
need to explore different avenues of treatment for Alzheimer’s.

Could our way of life contribute to an
unprecedented increase of Alzheimer’s disease, cancer, and heart
disease? Research shows that healthy eating, exercise, and a good
night’s sleep work together to prevent a myriad of diseases.

As if daytime isn’t enough time to
ruin our health, we use evenings to cram in TV, Facebook,
volunteer work, meetings, social activities, or heaven forbid we take
work home. So much to do, so little time. Then when we fall into bed,
our brains are still going full tilt to remind us of what we still
have to do, or what we’ve forgotten to do. Sweet dreams are a long
time coming just to be interrupted by the alarm clock letting us know
it’s time to get up and do it all over again.

Maybe it’s time to take a deep
breath, spend some quality time relaxing and catch some extra ZZZ’s.
Sweet dreams may be the answer to some of life’s most perplexing
health issues.

Monday, October 14, 2013

After hearing about the expensive
tests for Alzheimer’s, researchers came up with a cheap screening
test. The really amazing thing about this test is you may already
have the necessary item in your pantry—a jar of peanut butter.

Known as the brief olfactory test,
taking a whiff of Jif, or any peanut butter for that matter, can help
a researcher determine if you have Alzheimer’s. Anyway, that was
the news out of the University of Florida.

It’s commonly known that Alzheimer’s
affects the sense of smell. Other studies have been done on the
olfactory system and Alzheimer’s disease. This is not the first!
According to a 1989 study published in the International Journal
of Neuroscience, researchers believed that the changes occurring
in Alzheimer’s starts in the cortical region of the brain, the
region that controls our sense of smell. In 2010, the Alzheimer’s
Association and the National Institutes of health funded a study that
showed that Alzheimer’s mice could not distinguish odors as well as
other mice. At that time, the researchers noted that an olfactory
test could be an inexpensive way to diagnose Alzheimer’s.

Fast forward to 2013 and we have the
peanut butter whiff test. Jennifer Stamps, a graduate student at the
University of Florida’s McKnight Brain Institute, conducted the
test on ninety people. Some of the people had Alzheimer’s or other
types of dementia and others had mild congnitive impairment (MCI).
Although researchers did not know which people had which problem when
they conducted the tests, they were surprised to find that the
Alzheimer’s patients reacted to the sniff test differently than the
other groups.

Here’s how the test was conducted: A
tablespoon of peanut butter was put on a metric ruler and one nostril
was checked at a time. Eighteen of the study group had early-stage
Alzheimer’s, and they all had one thing in common—trouble
smelling the peanut butter out of their left nostril. The group with
other types of dementia did not have this problem. The results of the
twenty-four people with MCI was mixed—ten had trouble with the left
nostril but fourteen didn’t. Is this an indication that the ten
will go on to develop Alzheimer’s disease? Time will tell.

Other researchers urge caution due to
the small number of cases included in this study. Others note that
head trauma, sinus problems, or congestion can affect the results of
an olfactory test. In fact, my friend Donna can’t smell anything
after an accident that happened when she was a teenager.

So, are you tempted to grab a jar of
peanut butter and sniff away? Being the curious person I am and
having seen the devastating effects of dementia, I did exactly that.
Right nostril, a-okay! One down, one to go. Second nostril—nothing,
nada, zip, zero. Oh, I did not like this test. Not one little bit.

Time to analyze the test results. Let’s
see. Left nostril. Come to think of it, I just came off a ten day
supply of antibiotics for a left ear infection. So I’m sure that
could have affected my sense of smell in my left nostril. Anyway
that’s my story and I’m sticking to it. The peanut butter test
should come with a disclaimer: Don’t try this at home.

Monday, September 30, 2013

When a day is done, whether good or
bad, it immediately becomes history. One of the things about history is
that you can’t go back and change it; nor can you go back and
relive it.

As far as history goes, we all learn
important dates in school. In fact we learn more dates than we can
ever remember. Sometimes our teachers help us devise tricks to
remember and with a little rhyme, we might always remember a date.
“In fourteen hundred ninety-two, Columbus sailed the ocean blue.”
How could I ever forget that date?

That’s history class. I always
enjoyed history, outside of the date thingy. History is
stories...important stories...about events that shape us now, although most school kids think history is boring. The reason it is boring
to kids is because the rich stories of the past are reduced to facts and dates, and
some of those are presented in a biased and controversial manner. It is interesting to hear that
sometimes important events are skipped in the history that children
are taught today.

Each of us has a personal history with
dates that stick in our minds to be re-examined annually. We have
birth dates, death dates, anniversaries, graduations, and a myriad of
other events not only to mark time, but also to remember. Is it any
wonder that with all these dates stuck in our heads, buried deep
inside our brains, that we sometimes forget an appointment or a loved
one’s birthday?

Today’s date takes me back to a day
twenty-three years ago when I saw my dad leave this world. It was on
the anniversary of his own dad’s death. I called my mom tonight and
we talked about a lot of things before she brought up the date. I
knew it was on our minds from the first “hello.”

Our brains are so complex that we can’t
even comprehend all that goes on between our ears. I can’t
visualize how many a billion is whether I’m talking about dollars
or nerve cells in my brain. Understanding my brain would be a lot
like understanding how I can write words on a keyboard and have
this computer take those words and allow me to put them on the
Internet where anyone can read them. Perhaps,
as perplexing is to comprehend how anyone can totally understands how that
process actually works.

Historical facts we learned, and our
own personal history, is stored in our brains. We have much more
stored in our brains than we can ever retrieve. If you are like me,
you know it’s there, but can’t retrieve it at the moment you want
it. For instance, if you are playing a game of Trivial Pursuit and
you know the answer, but can’t remember what it is until
immediately after the time is up. Worse yet, you need to know an
important piece of information and instead of remembering it at the
crucial time, you remember it in the middle of the night.

Memory and history are two parts of the
same thing. When two people share a history, and Alzheimer’s
subtracts that connection, it is a loss for both. Our page in history
is our life story, and we want that story to be action packed, suspenseful,
and with a glorious ending. With personal history, the dates are not nearly as important as the stories. The only test in life, is a test
of self.

Saturday, September 21, 2013

Earlier this week, Dr. Francis Collins,
director of the National Institutes of Health (NIH) fulfilled his
promise to Alzheimer’s advocates to designate $40 million from his
2013 budget for Alzheimer’s research. I was one of more than 700
advocates at the Alzheimer’s Association Advocacy Forum, where Dr.
Collins made the announcement that he was taking this unique step to
show the NIH’s commitment to finding a cure for a disease that has
baffled scientists for decades.

During his keynote address on April 23
at the forum, Dr. Collins said, “I so wish it could be more, but I
hope you hear in this kind of a commitment the way in which we at NIH
see this as an opportunity and responsibility. We also hope that
moving forward we can put medical research back on the stable track
that is needed in order to support the research and the researchers.”

The story in last week’s New York
Times and USA Today both report that an additional $5
million has been designated by the National Institute on Aging (NIA)
to provide support for innovative clinical trials.

Among the trials being supported
through these additional funds is the Dominantly Inherited
Alzheimer’s Network Trials Unit (DIAN-TU) trial at Washington
University, St. Louis. Dr. Randy Bateman is the team leader. I met
Dr. Bateman several years ago when he accompanied Missouri advocates
on our visits with our legislators at the Alzheimer’s Forum in
Washington, D.C. Hearing firsthand the possibilities of research to
find therapies or a cure for early onset Alzheimer’s is encouraging
in a way that reading about it cannot touch. Dr. Bateman is
passionate about his work, confident, and optimistic that a cure can
be found for the hereditary form of Alzheimer’s that can strike
during early adulthood.

The APOE4 trials being conducted by
Drs. Eric Reiman and Pierre Tariot at the Banner Alzheimer’s
Institute in Phoenix will be fully funded in 2013. Several other
trials are being funded to move them forward. An Allopregnaolone
Regenerative Therapeutic study at the University of Southern
California will evaluate the safety and tolerance of a natural brain
steroid to treat Alzheimer’s disease. Other studies will analyze
data collected from volunteers to identify promising therapies, test
existing drugs currently used for other conditions for effective
treatment of Alzheimer’s, and treatment based on targeting the
immune system.

In a letter I received as an
Alzheimer’s Ambassador, Alzheimer’s CEO Harry Johns said that the
fulfillment of NIH’s pledge is historic. “In addition to fueling
much needed research toward treatment, prevention, and ultimately a
cure, it shows the growing recognition that our cause is receiving at
the nation’s highest levels.” Johns praises hundreds of
Ambassadors and hundreds of thousands of advocates for making the
case in Washington, D.C., and in communities nationwide. In the
Alzheimer’s Association news release, Johns said, “These studies
are examples of the quality research in the pipeline that needs
further funding in order to prevent and effectively treat Alzheimer’s
disease by 2025 as outlined in the National Alzheimer’s Plan.”

Kudos to NIH and NIA for taking this
first step toward prioritizing research for Alzheimer’s. Now, we
need to keep pressing our legislators to take a proactive approach to
finding a cure for this disease.

Alzheimer’s is an equal opportunity
disease. It affects people without regard to race, religion,
financial status, political party, intelligence, education, or any
other classification you can think of. No human is immune to
Alzheimer’s. It could happen to you or to someone you love if it
hasn’t already.

It’s not a question of whether we can
afford the research for Alzheimer’s, the real question is—can we
afford not to fund research? Does it make sense to spend only $484
million on research that costs this country more than $140 billion
annually in Medicare and Medicaid? Alzheimer’s is the sixth leading
cause of death in the United States, yet the funding is minuscule
when compared to research spent on other diseases which received
billions annually to fund research.

Some of us have spent years advocating
for Alzheimer’s research dollars. It can be frustrating when
funding is stagnant, or worse yet, the years funding was cut. By
hanging tough, advocates have fought for treatment equity for those
living with Alzheimer’s and other dementias.

This is not the time
to rest on our laurels, it is the time to step up our advocacy while
the focus is on research. The ultimate goal is a world without
Alzheimer’s, and it can be done.

Sunday, September 15, 2013

Jim wandered off many times after he
developed Alzheimer’s. The first thing I learned as a caregiverwas
immediate action was necessary to find him. I can’t count the
number of times he disappeared. It only took a moment of inattention,
or the misconception that someone else had eyes on him. Whether he
disappeared mid-morning at a mall in Columbia, early afternoon at
Silver Dollar City, late afternoon at the airport in Las Vegas, or
from our home in the middle of the night, a search began immediately.

Unfortunately, wandering is a common
problem for people with Alzheimer’s. Sixty percent of people with
dementia will wander causing anxiety for the caregiver and creating a
life threatening situation for the wanderer. Beginning the search
immediately is key to finding your loved one safely. Statistics are
on your side since ninety-four percent of the time they will be found
within one and a half miles of where they disappeared.

You can take a few steps to help find
your loved one. Alert neighbors of the situation and ask them to
call you if they see your loved one walking alone. When searching,
look in the direction of your loved one’s dominant hand—that is
the direction they will usually go. Use Medic Alert+Alzheimer’s
Association Safe Return or Comfort Zone (an electronic device). If
you don’t immediately locate your loved one, call 911 and report
them missing.

To ensure that when you call 911, the
appropriate steps are taken to activate an immediate search,
legislation should be in place. Legislation geared toward a Silver
Alert should encompass all persons with dementia regardless of age.
Jim had early onset dementia and would have been too young for the
Silver Alert in states that identify only persons sixty-five
or older with dementia. Missouri has an “Endangered Person
Advisory” which could include anyone who may be in danger because
of age, health, mental or physical disability, environment or weather
conditions.

If you have a loved one with dementia,
it is important to know the laws in your state and work toward
legislation to make sure anyone with Alzheimer’s is included
regardless of age. The law should also have provisions to activate
the system based on a caregiver statement since many people wander
before they have a formal diagnosis.

An important part of legislation is
training for all emergency personnel. Proper training can make all
the difference in finding the person with Alzheimer’s quickly using
search techniques specifically tailored to persons with dementia. The
immediate emphasis should be on a search of the local area. Quick and
educated response is key to survival.

Silver Alerts are state programs
designed specifically for vulnerable adults who have wandered. The
search for adults is different than those used for AMBER alerts.
AMBER alerts use statewide alerts which are not typically needed when
searching for an adult wanderer. Also, since most wandering adults,
like Jim, wander repeatedly, alerting everyone statewide each time an
adult wanders could cause the public to become desensitized. This
could do more harm than good by reducing the statewide response in
cases where it is needed.

The goal is to find wanderers within
twenty-four hours and reunite them with their families. The longer
the person with dementia is gone, the chances of finding them
unharmed is correspondingly diminished.

More than 125,000 search and rescue
teams are activated each year to search for missing persons with
dementia. This does not include the countless times that family
members search for and find their loved ones. Kimberly Kelly with
Project Far From Home estimates that as many as three million people
with dementia wander away from home each year.

We were fortunate and Jim was always
found quickly by either family, friends, neighbors, and during the
mall disappearance, security guards. I was young enough to go
searching for Jim, but not every vulnerable adult has a caregiver who
can look for them. A system needs to be put in place, nationwide,
that will activate an immediate search for vulnerable adults with a
goal to provide safe return to their homes.

Tuesday, September 10, 2013

We had a bright sunshiny, warm day for
our 2013 Walk to End Alzheimer’s at the Missouri State Fairgrounds
Saturday morning. I was there bright and early—6:30 a.m—along
with other volunteers and members of the committee. Sheila and I
played traffic cops as we directed placement of tables, conferring as
to whether that table might work better here or there.

For once we didn’t have to worry
about rain, but heat was a concern with temps expected to soar into
the upper 90’s. At the last minute, while a volunteer was on his
way to get more ice, we asked him to buy more water too. Walkers
began to arrive and organized chaos took over as teams began to group
together.

My sister-in-law, Ginger, started the
cake walk, Kim and Bobby Brown manned the raffle table (which may
have helped them rest up for awhile after bringing a trailer load of
tables and chairs), Sheila grabbed the microphone and began to make
announcements, registration tables were manned, and on my table, I
arranged books to sign and give to walkers.

As I signed, I chatted with friends and
family who came up to get a copy of Focus on the Positive. I
also met new friends who came to the walk for the first time this
year. As I was signing, a woman walked up wearing a shirt that said
“Hellen’s Heroes.” I knew she was on the team honoring Hellen
Cook, the woman with dementia whose body was found after nearly a
month long search. Hellen was Darolyn’s mother, and she introduced
me to her brother Mike. My heart went out to this family who lived
through a caregiver’s worse nightmare. They have taken this tragedy
and turned it into a positive by proposing “Hellen’s Law” to
tighten up reporting an endangered missing person. I had my picture
taken with member’s of Hellen’s Heroes and felt an instant
connection with Darolyn.

Later as I was signing books, Linda
Newkirk, executive director of the Greater Missouri Chapter, was
explaining the significance of the pinwheel flowers and Jim’s Team
held our purple flowers high to show that we had lost a loved one.
Others held up orange, blue, and yellow flowers as their colors were
explained. Shortly after, Sheila came to my table and told me I
needed to go up to the front where Linda was speaking.

She finally dragged me away. When I got
there, Linda was talking about Hellen Cook’s family and their
advocacy. Then,Linda
Newkirk, Executive Director of the Greater Missouri Chapter,
announced that the chapter is placing a brick in their Garden of Hope
in recognition of my volunteer work and advocacy. I am so honored! Even after all these years, I still feel the Chapter did more for me
than I can ever do for them. They were my lifeline for ten years
while Jim and I traveled the Alzheimer’s journey.

Sheila, my
granddaughter, and I dropped our pinwheels into a bucket and took the
lead as four hundred walkers began the walk. Instead of finishing the
walk, we stopped and cheered others on as they came down the shaded
walkway. We headed back to the Highway Gardens. Volunteers were
planting the pinwheel flowers in the Promise Garden. The breeze
turned the pinwheels and tears pricked my eyes to see the expressions
of love.

I walked through
the Promise Garden snapping photos and found the flower I had
decorated for Jim. The breeze continued to turn the pinwheels nearby,
but it was as if Jim’s flower stopped to pose for the photo. I
snapped the photo, and the pinwheel resumed spinning.

Wednesday, September 4, 2013

I
think I loved him from the first day we met when his Uncle Orvie
introduced us outside the Dew Drop Inn in Stover. It was by chance
that Jim was in Missouri since he spent a lot of hisgrowing
up years in Oregon, Idaho, Utah, California... Jim loved to travel
and we often went to Oregon to visit his relatives and childhood
places. Later, we went to Estes Park and the Rocky Mountains
annually.

Jim
was a talented musician who loved to play his Fender guitar and sing
country songs. I remember one time I taped him with our gigantic
video camera singing “Colorado” while chipmunks and tourists
stopped everything to just soak up the sunshine, clear mountain air
and melody. Jim’s life was cut short when he developed dementia at
forty-nine. He passed away in 2005 after ten years living with a
disease that robbed him of his talents, sense of humor, and
thoughtful conversation.

Jim
lives in my memory and dreams, and I know that he is not forgotten by
his family and friends. We need to stop this disease before more
families go through the loss and pain of Alzheimer’s disease and
other dementia. Walks are held across the country. If you can’t
come to the September 7 Sedalia Walk. Join a walk near your hometown.
Walk for Jim. Walk for your loved ones. Walk for more than 5 million
Americans with this incurable progressive disease.

Monday, August 26, 2013

A group of four volunteers sat outside
Walmart Saturday morning with forget-me-nots and Walk to End
Alzheimer’s information. This has been an annual event for the past
several years. When Sheila and I first set up, it seemed that no one
was going to make eye contact and our “Good morning” greetings
often when unanswered. I couldn’t help but think that this was
going to be a waste of time.

We arrived early—eight thirty—in
hopes of beating the heat. We’ve gone through the entire summer
with unusually cool weather, and here we were outside on a day when
the thermometer was predicted to zoom into the nineties.

After thirty minutes, flies began to
buzz and the sun barreled down on the spot where we had set up our
table. “Do we dare move it any closer?” I asked eyeballing the
small spot of shade between the soda machine and the trashcan. “We
don’t want to be so close that the door stays open.”

We left our table where it was and
moved into the small spot of shade. Then, people began to stop and
ask about the Walk and about Alzheimer’s. The morning had started
getting interesting. They placed donations into our collection jar
and we had them write names on the forget-me-nots. Sometimes they
wrote a loved one’s name. Other times, they wrote their own name. I
handed the marker to a little boy and he signed with scribbles.

“How old is he?” I asked.

“He’s four. His name is Cash.”

I smiled. It never occurred to me that
he was too young to write, and of course, he would have a distinctive
name. Most kids do now-a-days.

Sheila with Forget-Me-Nots

“Sheila, with all the nice weather
we’ve had this summer, why did we pick the hottest day to schedule
this?”

“Well, we didn’t know it was going
to be this hot,” she pointed out. I used a forget-me-not for a fan
and she used a flyer.

From time to time, we saw people we
knew, but most passersby were strangers to us. Most had the story of
loss that paves the path of the Alzheimer’s journey.

Our donation jar filled up with
dollars, fives, tens, and one twenty. The forget-me-not skirt around
our table grew in length.

We handed out team packets and donor
envelopes. People just walked past and stuffed in dollars. Their
voices murmured, “Mom,” “grandpa,” “husband,” “friend...”

One woman wrote a name on a flower and
said, “My mom won’t go see the doctor, but we’re pretty sure
she has Alzheimer’s.”

I handed her a brochure. “Call the
number on the bottom. They will help you even though you don’t have
a diagnosis. Encourage your mom to get a medical workup to find out
whether she does have Alzheimer’s. Other conditions can cause
dementia symptoms and some are reversible.”

“Thank you so much!” she said. “I
never thought of that.”

Then, the highlight of my day—a woman
named Betty told us about a new Alzheimer’s Support Group. Our
group had dwindled, and we stopped having regular meetings. People
call me from time to time about support group and I refer them to the
chapter and offer to meet with them. Now, a woman stood in front of
me telling me that she was going to have the required training to be
a support group facilitator. I wrote down the information.

“An Alzheimer’s article is coming
out in The Democrat,” I said. “She wants some information
for a side-bar and this is so timely.”

Shortly after meeting Betty, Wyann
brought the forget-me-nots and donations they had collected at the
other entrance. Soon, Jessica and Samantha brought over the money
they had collected at Big Lots. She also brought the yummy looking
cupcakes she had left over.

It felt like mother nature had turned
up the heat, and although we had rearranged our table to be in the
shade, we were sweltering.

“Well, now we need to stay until all
the cupcakes are gone,” Sheila said.

“I’m game,” I replied, “but I’m
tired of drinking hot water. I’ll go to McDonald’s and get us
some iced tea.”

Two hours later, the iced tea was
almost gone, and the last two cupcakes went to a woman who had four
kids. “They can share,” she said.

As we packed up and folded the table,
Sheila said, “You know, it was hot, but it was fun.”

“It was! I feel good about it,” I
said. “I’m so excited about the Walk!” I took my things to my
car and headed back to the store to get the items on my shopping
list.

As I neared the entrance, a man holding
two shopping bags said, “Whew, it’s getting hot out here, isn’t
it?”

“It sure is,” I agreed just as I
felt a blast of cold air from the open door. The heat is on in
Missouri, but that isn’t going to stop us from doing what we can
about Alzheimer’s.

Saturday, August 17, 2013

Maybe it was because my grandkids went
home and the house was too quiet. Maybe it was just the thought of
growing older and retiring. Whatever caused it, I had dreams of my
brother Donnie, of Jim, and days long gone by. We were all younger in
my dreams. As I awakened from a deep sleep the words echoed through
my head, “Those days have come and gone.”

It’s hard to understand the world of
dreams. Sometimes they inspire me to write short stories or provide a
scene for my novel in progress. This time, the dreams weren’t so
important, or unusual, it was the truism that stood out from my
night’s sleep.

The past is a part of me that lingers
in my mind just to be awakened in my alternate life—dreamland.
Dreams can seem so real at the time. It made me think of Poe’s “A
Dream Within a Dream.” Reality blurs with dreams, and it is
possible to cling to the past of a “surf-tormented shore” while
we watch the sands of our lives slip through our hands.

Unlike Poe, I choose to not weep and
fall into despair over the days that have come and gone. Yes, at
times, it is more challenging to put the past aside than others.
Keeping busy, working toward goals, feeling a sense of accomplishment
are tools to push away the dark sadness of another time gone forever,
another place that no longer exists.

Yet, the very busyness that helps keep
the past from tormenting, can also cause regret. Sometimes, I have to
choose between obligations and inclinations. If I’m not careful, I
find myself having regrets that I let work interfere with family
time. But if I’m realistic, which I am most of the time, I realize
that work has been a beneficial part of my life in more than a
financial sense. When Jim was in need of constant care, I needed work
as a diversion from the overwhelming job of caregiving.

Being around my grandkids this week
reminded me of when my kids were young. Instead of just grabbing
something, anything, to eat, I needed to think about meal planning,
like when my sons were small. Even going to the state fair took on a
retro atmosphere. It had been years since I stood on the Midway while
the kids ran from one carnival ride to another. I’m older, slower,
and somewhat wiser now. I wore comfortable shoes and used the
umbrella I carried to shade me from the sun.

It was a week that took me back in
time, but with changes. Okay, I’ll admit that I’m about a
thousand times more indulgent with my grandkids than I was with my
children. My XM radio station was on the Disney channel all week. My
TV was tuned to cartoons and pre-teen shows. I went to the movies,
twice. I drove by Kentucky Fried Chicken and ordered above the sound
of the “La la la-la” Smurf happy song. The question of the day
became, “Is a Smurf’s butt blue?”

Just like in my dream, the past week of
a house filled with laughter, thumps, and bumps from morning to
bedtime have come and gone. It took me by surprise how much I missed
it the instant the house took on its usual quiet, peaceful
atmosphere.

I decided to go work for a few hours to
take my mind off it. I pulled my car out of the garage and the radio
began to play “Chloe, You’re the One I Want.” I’d heard that
song a dozen times in the past few days. I shook my head and twisted
the dial pausing on Escape, Praise, 80’s on 8, and finally rested
the dial on 60’s on 6. It was obvious that those days had come and
gone. I punched the button my granddaughter had set and listened to
some here and now music to appreciate the blessing of today and the
tomorrows that are mine to enjoy.

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Early Onset Alzheimer’s

This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

Blog Awards

Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than t...

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Books are a print version of Linda's award-winning Blog. These books are published for the benefit of those without Internet access or who just prefer to curl up with a book rather than browsing online. If you enjoy Linda's blog posts, you might want to purchase the book for a friend or family member.

Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

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Alzheimer's Anthology of Unconditional Love by L. S. Fisher

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I have participated in a link exchange with the Fisher Center for Alzheimer's Research Foundation. They have this blog http://earlyonset.blogspot.com/ listed in their Alzheimer's blogs.

Lindsay Nason wrote about my Early Onset Blog: "I want to thank you for sharing your powerful experience and your creative suggestions with others. . . . Your blog offers a unique and personal insight into this disease, which can be such a comfort to other members of the Alzheimer's community."

Thank you, Lindsay, for your kind words and for including the Early Onset Blog on your website.